Thursday, February 4, 2010

I'm not happy with my many negative posts lately, but I understand where they are coming from.

You see, I thought CFS and I had an understanding. I play by the rules most of the time. Then, if something big or important comes along, I cheat! There is a mild punishment afterward, where I am immediately contrite and rest up for a day or two. CFS forgives me, and I'm back to "normal" within the confines of the rules.

And then CFS betrayed me. Or, perhaps it was the last straw. In any case, it stopped forgiving me, and left me sitting in the corner for a very, very long time. No amount of crying or whining has softened its heart and made it relent.

Thanks to Renee's recent post, I am now coming to terms with the fact that I am in a relapse, not a crash. I don't know how long it is going to last. I just know that this is my new "normal," and it's time to adjust my life accordingly.

If I look at it objectively, I can see what happened. Stress is the trigger for my disease. I can see how the unrelenting stress over the summer caused me to fall further down the slope. It terrified me, because I thought, what if I have another episode? What if I fall further? There isn't that much further to go. The next bout will send me to bed with severe CFS for sure.

Well, if that happens, there will be people to take care of me and my family. It is what it is, right? But I can't let fear rob me of hope. I need to continue to tackle this disease the same way I always have, and trust that I will eventually see improvement. Inch by bloody inch, that is.

So, I'm going to change my attitude! I will wake in the morning and force myself to physically smile. They say the physical act of smiling triggers endorphins. I could use some endorphins. I'm going to focus on gratitude, because I have so, so much to be grateful for! Of all the things that CFS has stripped me of, it has taken nothing from me of any real importance. I am loved. I am happy.

Some good news: I don't have to work at all the next three weeks! That should allow me to stick to a routine and consistently stay within my energy envelope. It this experiment is successful, I may not have to go back to work at all. :)

5
comments:

Hi Shelli,I hope the experiment works for you so that you can have one less thing to worry about. As you know, I can't relate to what you're feeling. It's one thing I HAVE realized by watching Jessie at her worst - that I can't wrap my mind around what it's like - no matter how close I am to it. What I can do, however, is rally for you and pray for you and that's just what I'm doing. I think the smiling idea is wonderful.

You say that you're not happy with your posts but I want you to know that they help me because reading them tells me that my experience of CFS is "normal." I'd never been able to put into words the very experience you describe: that you thought you had an understanding with CFS and that when you cheated, there would only be a mild punishment. How many times have I cried because I too thought we had a deal and that the punishment wouldn't be as bad as it turned out to be. Thank you so much for finding the words to articulate it.

The lesson for me is: it is what it is. CFS is going to do what it's going to do and one thing it seems to do is to be very unpredictable. So, all I can do is ride the wave and be thankful when a morning or an afternoon goes well (I'm always non-functional in the evening).

Yes, a smile does increase endorphins. I find that just a gentle half smile relaxes the muscles in my face and that the rest of my body then follows.

Hi ShelliI am with you with the smiling! I am going to wake up each morning and smile because I am still here, I am blessed, and I am loved. Thank you Shelli for reminding me of the many blessings I do have no matter if this is all there is or if things change. Your post is powerful ~ ALL your posts are powerful Shelli so thank you for being honest with us here whether they are what you call "negative" or not. It helps us all.

You've perfectly described where I am right now, too. I've been in a bad crash (relapse) since mid-September. In my case, I think it's due to the presence of lots of viruses - viral exposure always causes the worst and longest-lasting crashes for me. My doctor told me yesterday that the bad viral season is almost over - I'm hoping things will improve.

Yep, it's the stress that finishes me too. It doesn't matter how well I can be managing my energy if I have to deal with an issue, whether emotional, financial, family or whatever, I'm done in for a few days. Add major life events and the few days turn into months.

This Winter has been colder than usual and I've had loads of change this year. I've seen the ground I made up in 2008 slip through my fingers. Thank you so much for reminding me it's normal with this illness and we are all in it together.

About Me

I am a 46 year old stay at home mom. I have been married since 1988 to the world's best husband. We have six wonderful children. My husband and I are starting our own small business together. I have had Chronic Fatigue Syndrome since about September 2006. It's such a strange disease (illness? condition? ailment?). I wanted to create a place where I could come and write about what it's like to deal with the challenges of living the CFS life. I honestly believe that sometime, somewhere, some doctor is going to magically tell me, "Oh, I know what this is!" and I will be cured. Until that time, I'm hoping to learn something about myself and maybe help others.